Contents >>
Family >>
Family Services: People with a disability: need for guidance

Services and Assistance: People with a disability: need for guidance

In 1998, around one in five 15-64 year olds with a disability needed help to either make friends, interact with others, maintain relationships, cope with feelings or emotions, make decisions, or think through problems.

Wellbeing is partly determined by a person's ability to establish, develop and maintain relationships with others, to manage feelings, emotions and consequent behaviour and to make good decisions. These essential day-to-day tasks can be difficult for anyone. People living with a disability, particularly those restricted by a psychological or intellectual impairment, may experience additional difficulty and may need help from others.

There has been a continuing move away from the institutional care of people with a disability towards independent living within the community. As part of this general trend, only a small proportion of people with mental disorders now spend extended periods in psychiatric hospitals or residential facilities.1 Meeting the challenges of living outside an institutional setting may have increased some people’s need for help to make decisions, control behaviour and manage relationships. These aspects of everyday living are an area of concern to service providers to people with a disability living in the community.

Disability and need for guidanceData presented in this article were collected in the 1998 ABS Survey of Disability, Ageing and Carers. For more information about this survey see Disability, Ageing and Carers: User Guide, Australia, 1998 (ABS cat. no. 4431.0).

In the survey, a person is defined as having adisabilityif he/she has a specified limitation, restriction or impairment, which has lasted, or is likely to last, for at least six months and which restricts an everyday activity.

The focus group in this article is people with a disability who were of workforce-age (15-64 years) and who were living in the community (in a private dwelling or in a self care arrangement in a non-private dwelling). For this population, needing guidance is defined as feeling that help is needed from others, because of disability, to do one or more of the following three tasks:

make friends, interact with others, or maintain relationships;

cope with feelings or emotions; or

make decisions or think through problems.

In the survey, 94% of the selected sample of working-age people with a disability living in the community were personally interviewed. Information for the remaining 6% was collected by interviewing a third party (often a carer) on behalf of the person selected for interview. Of those needing guidance, information was collected for 16% by this method.

GuidanceMost people perform a common set of tasks as part of their routine living; tasks such as dressing, walking, understanding others, taking medicine, filling in forms, cooking, washing and travelling away from home. In the 1998 Survey of Disability, Ageing and Carers, people with a disability were asked whether they had difficulty performing a range of day-to-day tasks and whether they needed help with them. Three of these tasks were grouped together under the broad activity heading of ‘guidance’. They were: making friends, interacting with others, or maintaining relationships; coping with feelings or emotions; and making decisions or thinking through problems.

The focus of this article is the extent to which work-force age people living in the community, because of their disability, felt (or were felt) to need help from others to perform the three guidance-related tasks. In 1998, 8% of the 2,066,700 people in this group needed help to make friends, interact with others, or maintain relationships, 15% needed help to cope with feelings or emotions, and 14% required assistance to make decisions or think through problems.

PEOPLE AGED 15-64 YEARS WITH A DISABILITY(a): PROPORTION WHO NEEDED GUIDANCE - 1998

Guidance-related tasks

Making friends, interacting with others, or maintaining relationships

Coping with feelings or emotions

Making decisions or thinking through problems

Total with a need for guidance(b)

Total(c)

Restricting impairment

%

%

%

%

‘000

Psychological

36.9

60.4

53.8

72.3

238.8

Intellectual

28.9

35.9

47.6

56.4

213.9

Head injury, stroke or brain damage

21.6

30.6

33.0

41.3

146.4

Sensory or speech

11.8

16.5

15.7

23.9

449.3

Physical

7.4

15.4

13.4

19.7

1,535.0

Total(d)

8.4

15.4

13.6

20.5

2,066.7

(a) Living in the community.(b) The sum of the three guidance-related tasks exceeds the total because a person can need help with more than one task.(c) The sum of the restricting impairment types exceeds the total because a person can have more than one type of restricting impairment.(d) Includes those whose restricting impairment type(s) could not be determined because of insufficient information.

Source: ABS 1998 Survey of Disability, Ageing and Carers.

Types of restricting impairmentAny loss or abnormality of psychological, physiological or anatomical structure or function can be classified to one of five broad types of restricting impairment (see Australian Social Trends 2001, Disability among adults). Need for guidance (i.e. need for help from others with at least one of the three guidance-related tasks) was most prevalent among those restricted by a psychological impairment (72%). Guidance was felt to be needed to a lesser extent among those restricted by an intellectual impairment (56%), by head injury, stroke or brain damage (41%), by a sensory or speech impairment (24%) and least of all among those restricted by a physical impairment (20%). Those restricted by a psychological impairment were also the most likely to need help to make friends, interact with others, or maintain relationships (37%), to cope with feelings or emotions (60%) and to make decisions or think through problems (54%).

Frequency and intensity of needOf those who had a need for guidance because of their disability, 20% always needed such help and 80% only sometimes needed it. The majority (57%) needed help at least once a week, with almost one in four (24%) needing guidance on a daily basis.

Of those who needed guidance, those restricted by a physical impairment tended to need guidance less often than those restricted by other types of impairment. Those restricted by head injury, stroke or brain damage (39%) and those restricted by an intellectual impairment (also 39%), were the most likely to need guidance on one or more occasions every day.

PEOPLE AGED 15-64 YEARS WITH A DISABILITY(a) NEEDING GUIDANCE: INTENSITY AND FREQUENCY OF NEED FOR GUIDANCE - 1998

Intensity of need

Frequency of need

Sometimes

Always

Less than once a month

At least oncea month

At least oncea week

At least oncea day

Total(b)

Restricting impairment

%

%

%

%

%

%

%

‘000

Psychological

69.4

30.6

10.8

89.2

71.0

33.4

100.0

172.7

Intellectual

64.3

35.7

13.1

86.9

70.6

38.6

100.0

120.6

Head injury, stroke or brain damage

70.7

29.3

15.4

84.6

66.2

39.4

100.0

60.5

Sensory or speech

68.1

31.9

13.7

86.3

61.0

30.7

100.0

107.5

Physical

78.5

21.5

19.0

81.0

58.6

25.5

100.0

302.9

Total(c)

79.6

20.4

19.4

80.6

57.3

23.6

100.0

424.7

(a) Living in the community.(b) The sum of the restricting impairment types exceeds the total because a person can have more than one type of restricting impairment.(c) Includes those whose restricting impairment type(s) could not be determined because of insufficient information.

Source: ABS 1998 Survey of Disability, Ageing and Carers.

Long-term health conditionsA long-term health condition differs from a restricting impairment in that a long-term health condition is a disease or disorder which has lasted, or is likely to last, at least six months. A long-term health condition can also be a disease, disorder or event (such as a stroke, poisoning, or an accident) which produces an impairment or restriction which has lasted, or is likely to last, at least six months.

In 1998, there was considerable variation in the extent to which the long-term health conditions of workforce-age people with a disability were accompanied by a need for guidance. At a broad level, those with a mental or behavioural disorder were more likely to feel (or be felt to have) a need for guidance than those with a physical or sensory disorder. At a more detailed level, relatively high rates of need for guidance prevailed among those with mental retardation (82%), mental disorders due to alcohol and other psychoactive substance use (72%), attention deficit disorder or hyperactivity (68%), schizophrenia (68%), depression or mood affective disorders other than postnatal depression (65%) and phobic and anxiety disorders (63%). In contrast, need for guidance was relatively low among those with back problems (19%), high cholesterol (18%), arthritis and related disorders (16%), leg, knee, foot or hip damage from an injury or accident (14%) and noise induced deafness or hearing loss (14%).

Those health conditions that were associated with needing guidance tended to also be associated with needing help with each of the three guidance-related tasks. For example, of workforce-age people with a disability who had schizophrenia, 46% needed help to make friends, interact with others, or maintain relationships, 54% needed help to cope with feelings or emotions, and 50% needed help to make decisions or think through problems.

Demographic and family characteristicsIn 1998, of 15-64 year olds with a disability, the need for guidance because of disability was more common among younger people than among older people. Relatively high proportions of those aged 15-24 years needed help to make friends, interact with others, or maintain relationships (16%), to cope with feelings or emotions (22%) and to make decisions or think through problems (19%). The corresponding proportions among those aged 55-64 years were lower at 4%, 9% and 9% respectively. These differences may be due in part to the difference in the proportions of the two age groups restricted by each of the impairment types. Younger people with a disability were more likely to be restricted by an intellectual impairment and somewhat more likely to be restricted by a psychological impairment, both of which were relatively often associated with a need for guidance. In comparison, older people were more likely to be restricted by a physical impairment or a sensory or speech impairment, both of which were less likely to be associated with a need for guidance.

There were some small differences between men and women in their need for guidance. In 1998, men were slightly more likely than women to need help to make friends, interact with others, or maintain relationships, whereas women were slightly more likely than men to need help to cope with feelings and emotions (17% compared with 14%), and to make decisions or think through problems.

Close family relationships, proximity to others and sense of isolation or dislocation may also influence the need for guidance. Equally, having a need for guidance may influence a person’s living arrangements and potential for partnering. In 1998, relatively low proportions of those who were living with a spouse needed help to make friends, interact with others, or maintain relationships (6%), to cope with feelings or emotions (13%) and to make decisions or think through problems (10%). Help with each of these three guidance-related tasks was more likely to be needed by lone parents and people living alone than by people living with a spouse.

Those 15-64 year olds with a disability living with a parent tended to be more likely to need help with these guidance-related tasks than those in other living arrangements. This greater likelihood is in keeping with the types of restricting impairment common to younger people with a disability. In 1998, 20% of those who were living with one or both parents as a non-dependant child needed help to make friends, interact with others or maintain relationships, 23% needed help to cope with feelings or emotions, and 31% needed help to make decisions or think through problems. Corresponding proportions were lower among those in other living arrangements, including those living alone.

PEOPLE AGED 15-64 YEARS WITH A DISABILITY(a): NEED FOR HELP WITH GUIDANCE-RELATED TASKS BY SELECTED CHARACTERISTICS - 1998

Guidance-related tasks

Making friendships, interacting with others, or maintaining relationships

Coping with feelings or emotions

Making decisions or thinking through problems

Total

Selected characteristics

%

%

%

‘000

Age group (years)

15-24

15.5

21.6

19.0

229.4

25-34

11.2

16.7

16.1

303.5

35-44

10.5

19.7

15.2

432.0

45-54

6.6

15.2

13.4

546.2

55-64

4.2

9.1

8.7

555.6

Sex

Male

9.2

14.4

12.9

1,078.3

Female

7.6

16.5

14.3

988.3

Relationship in household

Family member

7.9

14.9

13.2

1,669.6

Husband, wife or partner

5.8

12.8

10.1

1,258.0

Lone parent

8.1

18.8

16.4

146.1

Dependent student

18.0

22.3

19.0

68.4

Non-dependant child

20.1

23.0

30.6

150.9

Other related individual

*9.4

21.0

22.6

46.1

Non-family member

10.6

17.7

15.1

396.7

Unrelated individual in family household

**20.9

**15.3

**15.3

12.8

Group household member

*7.6

18.0

*12.7

71.3

Lone person

10.9

17.8

15.6

312.5

Total

8.4

15.4

13.6

2,066.7

(a) Living in the community.

Source: ABS 1998 Survey of Disability, Ageing and Carers.

Self assessed health statusIn 1998, workforce-age people with a disability were more likely to regard their general health as poor the more intensely they needed guidance. Of those who did not have difficulty with any of the three guidance-related tasks, a small proportion (5%) considered their general health to be poor. This compared with 19% of those who did not need guidance but had difficulty performing at least one of the three guidance-related tasks. A higher proportion of those who sometimes needed guidance (23%) and an even higher proportion again (36%) of those who always needed guidance, felt that in general, their health was poor.

PEOPLE AGED 15-64 YEARS WITH A DISABILTY(a): PROPORTION WHO FELT THEIR HEALTH WAS POOR - 1998

(a) Living in the community.(b) With any of the three guidance-related tasks.(c) With at least one of the three guidance-related tasks.

Source: ABS 1998 Survey of Disability, Ageing and Carers.

Participation in selected activitiesImpairment, the need for guidance, and participation in a broad range of activities are likely to be inter-related. In 1998, people with a disability aged 15–64 years who needed guidance had lower participation rates for several activities than those who did not need guidance.

Needing help or having difficulty with a guidance-related task was associated with some travel restrictions. These travel restrictions may have further limited participation in other activities. In 1998, while only a very small proportion (1%) of workforce-age people with a disability who needed guidance were house bound, most experienced some form of travel restriction. For example, 55% had difficulty travelling to places away from their home without assistance, 52% could not go out as often as they liked, 41% were either not licensed to drive or never drove, and 23% could not use all forms of public transport.

Each of these four measures of travel restriction increased as the need for guidance intensified. In other words, those workforce-age people with a disability who had no difficulty with guidance-related tasks were less likely to have each of the four measures of travel restriction than those who had difficulty with one or more tasks but didn’t need help with any of them. Those who sometimes needed guidance were even more likely to have these travel restrictions, while those who always needed guidance were most travel restricted.

Higher levels of intensity of need for guidance tended to also be associated with lower rates of participation in many activities. This pattern was more evident for some activities, particularly paid employment. Of working-age people living in the community who did not have a disability, 74% were employed. The proportion who were employed was lower (55%) among those who had a disability but who did not have difficulty with any of the three guidance-related tasks. It was lower still among those who had difficulty with at least one of the guidance-related tasks but didn’t need help with any of them (41%). The proportion who were employed was lower again among those who sometimes needed guidance (33%) and lowest among those who always needed guidance (16%).

While not as pronounced, there were similar patterns of reduced participation in shopping, in at least one cultural or leisure activity away from home in the previous year (such as visiting a library or taking part in physical recreation) and in at least one social or community activity away from home in the previous three months (such as voluntary work or church activity). Greater need for guidance was also associated with being less likely to have visited a friend or relative in the previous fortnight. However, not all social activity occurs away from home. For example, in 1998, 8% of those who needed guidance used a computer at home within the previous three months to communicate with people outside their home.

PEOPLE AGED 15-64 YEARS WITH A DISABILITY(a): PROPORTION WHO PARTICIPATED IN SELECTED ACTIVITIES BY INTENSITY OF NEED FOR GUIDANCE - 1998

Intensity of need for guidance

Does not need guidance

Needs guidance

Selected activities

Has no difficulty(b)

Has difficulty(c)

Sometimes

Always

%

%

%

%

Leaves home

99.8

99.6

99.4

95.4

Can leave home as often as would like

77.9

49.9

49.0

44.6

No difficulty travelling without assistance

80.0

58.1

49.9

23.9

Holds a current driver’s licence and drives

82.3

76.1

65.6

32.5

Able to use all forms of public transport

86.9

81.8

81.1

58.9

Employed

54.7

41.3

33.3

15.7

Went shopping during the last fortnight

87.3

84.4

82.1

68.9

Participated in a cultural or leisure activity(d)

82.5

73.1

76.3

61.9

Participated in a social or community activity away from home(e)

96.6

93.4

91.2

86.2

Visited friends or relatives during the last fortnight

78.4

72.1

71.4

70.4

Used a computer for communicating with person(s) living outside the household(e)

11.4

10.1

9.5

**3.0

‘000

‘000

‘000

‘000

Total

1,259.3

382.7

338.0

86.7

(a) Living in the community.(b) With any of the three guidance-related tasks.(c) With at least one of the three guidance-related tasks.(d) Away from home in the last 12 months.(e) In the last 3 months.

Unless otherwise noted, content on this website is licensed under a Creative Commons Attribution 2.5 Australia Licence together with any terms, conditions and exclusions as set out in the website Copyright notice. For permission to do anything beyond the scope of this licence and copyright terms contact us.